NHS communication – does it exist?

I am suffering from a disease – it’s called NHS irritablitus. It starts with a nervous twitch every time I see a letter from a hospital and is shortly followed by uncontrollable outbursts of the Victor Meldrew nature. My blood starts to boil, despair sets in usually followed by mutterings concerning incompetency. I get a terrible sense of doom and money wasting. This is followed by terrible guilt that I could be denying someone a critical appointment or using up the valuable time of staff whilst they sort it out. All but one appointment (of many) in the last 5 months has been messed up by three different NHS Trusts. It’s annoying and stressful.

That is the problem, the Trusts don’t work with each other. The NHS appointment system and methods of communication are a shambles – at least in my experience. Let me fill you in on the highlights.

The Oxford Radcliffe NHS Trust have been moving over to on-line patient records (as opposed to stacks of papers that as a patient, I have to carry from one department to the next which is rather medieval). My cardiologist didn’t have any notes for the previous year – they had gone into a black hole. They also had a new electronic appointment system which kept sending me out appointments for seeing consultants on different days (in the past it has always been that I see two people on the same day – which means one trip and hotel stay in Oxford). This happened a few times in succession. I would get 2 letters (mailed separately), one from each department, and I had to try and phone around to coordinate them on the same day.  I explained to my lead consultant that it was getting difficult doing an overnight stay and could I see someone locally for my heart scans (which would also get around trying to coordinate appointments). I didn’t get a yes or a no, so we just left it as a ‘let’s see’.

Now, in the meantime, the Royal Brompton were double booking appointments and all sorts of things. One specialist said they would cancel my next review as it was too soon –  but that didn’t happen as I got a phone call from the department asking why I’d missed my appointment and hadn’t showed up.

Along side this I had been seeing my GP for a bladder problem and they said they would refer me to a specialist at Maidstone hospital for an ultrasound. I was expecting a letter saying ‘your appointment for an ultrasound is on x date’.  Here is how this story unfolded:

29th Feb:

I received a letter from Maidstone and Tunbridge Wells NHS Trust (standard issue) saying they would be sending me an appointment letter!! Eh – the NHS are sending letters to tell patients to expect a letter? It explains my GP had referred me and to ensure I didn’t have to wait too long whoever had the shortest waiting time would see me but I could be seen by someone in another team. I was referred to gynaecology. This seemed sensible seeing as my pelvic organs need checking over.

7th March:

Same letter arrives only the word gynaecology had been replaced with cardiology. I was confused. I try to find out more – the number it says to contact goes to answer phone.

14th March:

An appointment date for an Echocardiogram for 13th April. Ah now it makes sense – there were two referrals. This is the one Oxford requested for my annual heart scan. Only I’d just had one at Oxford and wasn’t due another until 2013. Doh. In the meantime I had tried calling the ‘help’ numbers for appointments and they didn’t understand. I leave a message on the cardiology number to say I need to discuss the appointment. They called back but not on the same day.

19th March:

I received this letter a few days later. I panicked. It was from Urology telling me to go for investigations the next Monday – 26th. The letter gave info for males and females and about tests other than the ultrasound. These were tests that I couldn’t do because of my impairment.   Of course the appointments are made without looking at a patient’s notes.  I was going away until the day of the appointment so called the number – the department had no details of anyone with my name going to their unit on that Monday. They said that gynae notes and appointment details are not kept in their department. I couldn’t speak to anyone at gynae because the secretary was on holiday. I spoke to a lovely lady who said the only thing she could think of was to print out my own patient notes about my impairment, to hand deliver them to her and she would walk them to the gynae department. I am lucky we live near the hospital.

26th March – I aim to go to my appointment for ‘tests’.

I get a phone call – in light of my patient notes and needing specialist facilities (i.e. access and suitably qualified staff, hoists etc), they are reviewing what tests are best and finding somewhere to do them – possibly involving booking out a theatre for maximum space.

I go back on a waiting to find an accessible place list! This should have been sorted out months ago.

I also get a letter dated 23rd March

This letter says I have an appointment at a cardiology clinic on the 30th of April. Another one to cancel as it’s to discuss the scan I don’t need.

Today:

I phone the appointment people – they tell me to phone cardiology direct and give me the number. I phone and it is on answer machine. I leave a message and they call back an hour or so later.

I explain I need to have an echo scan once a year and need to change the date to one in 2013 not 2012. Apparently I can’t do this. The referring Trust (Oxford) can only ask the GP to refer me to my local Trust about ten weeks before they want it done – or it will look like waiting times have gone up to a year. What the…..  So I have to phone Oxford in 2013, ask them to call my GP, who will write to the hospital, who will book me in within about ten weeks and post the results back up to Oxford.

What a complete waste of time. She cancels the appointments.

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